The long-term goal of this project is to increase cultural competence in
the genetic counseling profession through the development of an online
Genetic Counseling Cultural Competence Toolkit (GCCCT).

Project Objectives

a) To determine needs and identify strategies to promote cultural
and linguistic competence in the genetic counseling profession;

b) To develop a GCCCT to provide training on cultural and linguistic
competence for practicing genetic counselors and genetic counseling
training programs; and

c) To facilitate widespread dissemination and assess utilization and
impact of the GCCCT on genetic counselors, genetic counseling
training programs, and prospective students.

Project Need

As a genetic counseling program director for many years, I was aware that
the demographics of our profession do not reflect the diversity of the U.S.
I also recognized that if the genetic counseling training programs did not
consistently recruit and retain underrepresented minority students, the
profession could not diversify. In 2004, dissatisfied with our collective
lack of progress, I convened a retreat of the Midwest genetic counseling
program directors, a minority partner from each institution, and other
diversity experts. After evaluating the directors’ previous approaches to
recruitment, the experts and partners concurred that our actions, however
well-intentioned, were naïve and predictably ineffective. Our genetic
counseling “culture” could be perceived as intimidating or frightening. We
were encouraged to accept, not deny, the public’s fears about genetics and
clearly articulate what genetic counseling is, and how it applies to the
public and prospective students. The experts also encouraged infusing
cultural competence within ourselves, the genetic counseling training
programs, clinical practices, our home institutions, and the entire
profession to successfully attract underrepresented minority students and
provide optimal services. I did more research and found that the expert’s
advice was reinforced by diversity experts in our field, but I was generally
unaware of that. I decided to write a proposal for a JEMF Fellowship, which
supports an individual counselor’s pursuit of an area of interest. I wanted
to focus on learning more about cultural competence and pedagogy, My better
understanding of these topics would then be used to promote further interest
in and applications of cultural and linguistic competence in the genetic
counseling profession, and thereby contribute to reducing health
disparities.

Significance for the Genetic Counseling Profession

The 2006 U.S. Census Bureau reports the population is 66% White, 15%
Hispanic or Latino, 13% African American, 4% Asian, 1% American Indian or
Alaska Native, 0.5% Native Hawaiian or Pacific Islander, and 6% other. By
the year 2050, the proportion of racial and ethnic minorities in the U.S.
will exceed 50%. Among genetic counselors who completed the recent
Professional Status Survey, 91% were Caucasian, 4.9% Asian, 2% Hispanic, 1%
African American and 1% other. Health conditions with a genetic component
are ubiquitous and often overrepresented in minority populations due to
health disparities. These population trends, along with the elucidation of
the genetic basis of common diseases, increase demands on genetic counselors
to deliver quality care to diverse clients. However, commonly used proxies
such as skin color or last name are neither accurate measures of diversity
nor are they accurate predictors of a client’s genetic risks, behaviors, or
values. A genetic counselor’s skill set is influenced by culture and should
be adjusted for each client. As genetic counselors gain proficiency in
providing transcultural care, we can expect greater acceptance of genetic
services in hard to reach communities, and a greater public health impact.

Cultural competence toolkits have been developed by other health
professions, yet genetic counseling lacks widely available resources.
Developing a toolkit and increasing cultural competence in genetic
counseling is expected to enhance patient-centered care and improve client
satisfaction. This project proactively involves the genetic counseling
profession in the national dialogue on reducing health disparities.

Significance for Recruitment

Cultural awareness is the backbone of minority recruitment. Universal
cultural awareness is particularly important when there are few
underrepresented minority role models. Cultural factors can affect choice of
career and recruitment of underrepresented minority students to higher
education, suggesting programs should explicitly address these factors in
the overall institutional climate. If applicants feel their culture is
valued and accepted, raising cultural awareness and cultural competence in
programs may increase racial/ethnic representation among potential
applicants. The GCCCT points out the developmental nature of cultural
competence and encourages students to continue self-exploration. Because the
GCCCT is posted on the NSGC website, it can also reach prospective students.
We hope that this project heightens general awareness of cultural competence
in the profession, and leads to increased recruitment of underrepresented
minority students.

Significance for Genetic Counseling Training Programs

In addition to influencing recruitment, the GCCCT can be used to train
linguistically competent and sensitive genetic counseling graduate students.
Genetic counseling training programs may use the GCCCT to help students
identify literacy-appropriate patient educational materials, work more
effectively with professional interpreters, and to participate in cultural
immersion rotations. We include a variety of cultural assessment tools to
analyze case studies and links to questions that may be adapted for use in
clinical intake forms and counseling sessions. The GCCCT provides strategies
for exploring factors affecting clients’ perspectives, resulting in
students’ desire to work with diverse clients.

Significance for NSGC and Organizational Impact

The presence of health disparities has not been fully explored in genetic
counseling. However, the evidence in health care indicates that even
well-intentioned providers may contribute to health disparities because they
experience biases, prejudices, and uncertainty when treating minorities.
Providing training for health care providers is a strategy to correct the
disparities. In addition, more minority providers are needed, especially
since they are more likely to serve minority and underserved communities.
When advocating for workforce diversity and efforts to promote cultural
competence, NSGC leaders have noted that cultural competence is a missing
link between minority recruitment and the provision of optimal services to
culturally diverse populations. This project is significant because the
GCCCT complements NSGC organizational cultural competence efforts and
epitomizes the professional core value “to respect clients’ beliefs,
inclinations, circumstances, feelings, family relationships, and cultural
traditions.”

Significance for the Delivery of Health Care

Healthy People 2010 called for eliminating health disparities among
racial and ethnic populations in the U.S. However, racial and ethnic
disparities in health care access, quality and outcomes abound. While
poverty is associated with poor health status, health disparities persist
even when adjusted by income and level of education. Minority patients face
difficulties in accessing quality care and communicating with providers.
Minority clients are more likely to feel disrespected or misunderstood, and
less likely to comply and/or be actively involved in their treatment.
Disparities may be linked to lack of provider training in cultural
competency, stereotyping or biases, as well as inflexibility of
organizations to support diverse populations. Promoting cultural competence
among genetic counselors aligns with national public health initiatives to
improve the health of minority individuals by enhancing the quality of our
practices, attracting minority patients to use genetic services, and
increasing patient satisfaction.

Disclaimer
The purpose of the Genetic Counseling Cultural Competence Toolkit (GCCCT) is to improve the delivery of culturally responsive, client-centered genetic counseling to diverse populations and to reduce health disparities. The GCCCT is an educational resource; any suggestions do not define the standards of clinical or educational practice. All cases and scenarios are hypothetical. The JEMF, NSGC and Nancy Steinberg Warren, MS, CGC will not be liable for any medical or psychosocial applications connected with the use of or reliance upon any information obtained from this website or associated links and resources.